Okay so sorry I’ve been MIA lately! I have befriended a few more girls suffering from POTs and have been extremely down myself… Ive been chatting with my new friends and dealing with more of my own issues! nooooooooo!!!! 5 months doing amazing then had a minor set back and a few bumps in the road the past few weeks…. Here’s my update.
My hubby and I finally planned an awesome trip for this year September. 2 weeks in Europe-Switzerland and Italy…(My dream). I keep telling myself no matter what I WILL make this trip happen! so that the exciting good news!
Bad news is a few weeks back after my wine tasting weekend I stated getting a swollen/hard to swallow feeling in my throat. Kinda started freaking me out, was coming and going but mostly happening after eating then started happening all the time… My lifesaver Dr. Treyzon, GI specialist told me to head to an allergist in my area asap. (since he works in LA, 3 hours away from me). I went to the allergist to make sure I wasn’t having any crazy reaction to anything and did some scratch testing to make sure. (Picture below). Everything came back normal but I did get new info on possibly having Mast Cell Disorder. A week later I went to Cedars for a visit with Dr. Treyzon and he recommended I see and ENT real quick to make sure my throat wasn’t really closing up. The ENT scoped my throat in the office within 10 mins and said I was only 20% swollen (normal) could have been from any environmental allergy? who knows, but nothing dangerous or anything she could think of but she did prescribe an Epipen to be safe! -makes me feel better..
I am going Friday for more blood work to rule out mast cell. My GI specialist says it is rare and he does not think that is the case but we will test anyways…Crossing my fingers Im just having reflex or something simple…. I just feel like it never ends….
(I also wanted to mention on a side note-I love support groups but a few I am part of have been making me even more anxious then I need to be. Everyone is so quick to instill fear and worry in others because of their own experiences I sometimes think its to overwhelming. Pick and choose carefully fear it not helping anyone).
Speaking of support groups, I am part of a lyme disease support group because of my mother-in-law and because I have been through the Igenex testing myself. Up until this point I have been under the impression that my lyme panel was negative-(Read by 3 doctors)..then on the lyme “support” page another member posted her results, which happened to be identical to mine with comments saying the person had lyme… I made an appointment with a LLMD and went to see her yesterday. Turns out my results are inconclusive (But also negative by standards, which I am still trying to figure out what this means…). I will be doing more testing for co-infections, bacterial infections and mold infections. I am thinking about taking natural supplements just in case I need to kill off anything in my body that shouldn’t be there… but I need more information so I guess, we will see what happens next…
During all this my stress levels have been through the roof and finding a way to meditate and just think clear has been difficult. I decided to start working on myself and see a life coach, acupuncturist and hypnotherapist. I am absolutely loving my acupuncture! It has been helping me destress and stay calm! (and my insurance covers it!) Life coaching has been an awesome way to start looking a my future in a more positive way, learning how to overcome my fears and anxiety of “going backwards”.
I have to say Hypnotherapy has been wonderful as well! If you are willing to try it, be sure to have an extremely open mind, and ready & willing to change! Lucky for me I get to see one of CA’s best hypnotherapists. She is working me on anxiety and fears of the “what ifs” of my life & my visions of living more positive. She is also helping me over-come my fear of flying, this way I will be able to enjoye the long flight over seas for our next big adventure!
Like I said, I feel like it never ends and you need to fight everyday to feel good. When I’m good, I’m great and when I’m not feeling good, I’m really not feeling good…(I actually kinda laugh to myself when people complain about feeling sick or off….if they only really knew what we POTSIES deal with on a daily basis)…I just hope I can get a definite answer to figure out what the hell happened to me and what I need to do to move forward in life…I just hope I can stop searching soon, as I feel like Im chasing a ghost. Hoping my doctors hang in there with me too and don’t give up…Its hard to constantly feel like your annoying doctors on a daily basis… being persistent and strong is hard! but you just gotta keep on keepin on….